Thriving in the face of adversity | Stephanie Butler | TEDxHerndon

This talk was given at a local TEDx event, produced independently of the TED Conferences.

Life is going to challenge you at some point. When this happens you have a few choices- deny, cope, or thrive. When the speaker was diagnosed Multiple Sclerosis she chose to thrive.

Life is going to challenge
you at some point,

it's going to hand you something unfair,
it's going to take something from you,

it's going to interfere with your plans.

When this happens, you have a few choices:

deny, cope, or thrive.

I'm here today to tell you my story,
or at least, my story so far.

I was 25 years old,
a neurological intensive care nurse

and enrolled in an extremely
competitive graduate program

where I was studying
how to be a nurse anesthetist,

that's people who give anesthesia
in the operating room.

The program accepts
fewer than 25 people per year,

and I had worked really hard
in order to earn my spot.

To top it all off, this is what I did
in my downtime in order to relax.

(Laughter)

One day while I was working out

my right foot fell asleep,
and it never woke back up.

Then, over the next week,

the numbness that started in my foot,
began to spread up both of my legs.

I brushed it off

hoping that it was just a sports injury.

Maybe I had pinched a nerve
while weightlifting.

And I knew that if it was
anything more serious than that,

I was not prepared to face it just yet.

The truth was that I saw
the devastating effects

of neurological disease
every day at work,

and I refused to see myself
as anything but young and invincible

so I swept it under the rug,

and I kept going at the breakneck pace
that I was so accustomed to.

And then, before I knew it,
the big day came.

I was finally giving anesthesia
for the first time as a student.

I had spent months
cooped up in a classroom,

I could not wait to put
my new skills to the test.

I didn't know it at the time,
but everything would change that day.

In the locker room at the hospital

I fumbled trying to get
my completely numb legs

into my surgical scrubs.

And as I tightened
the drawstring of my pants,

I realized I had no feeling
from the waist down,

but still, I pressed on.

The students were expected
to arrive at the hospital early

and prepare the equipment
before the day officially began at 7 am.

It was still hours

before the sun would come up
and patients would start to arrive,

so I had the serene,
sterile operating room all to myself,

but inside, things were getting
a lot worse for me:

I lost the feeling in my right arm,

the ability to move my right hand,

my vision became nothing
but a blur of bright fluorescent lights.

It's then, at that point,
unable to see straight,

use my dominant hand
or feel three quarters of my body

that even I had to admit
that something was very wrong.

I somehow made my way
back to the locker room,

and I called my teacher.

She told me to go
to the emergency room immediately

which was only a few floors
below my feet,

but I couldn't even
make it to the elevator.

"Stay there" she told me,

"I'm only a couple of minutes away,
I'm coming to get you."

So I sat, and I waited.

And as I did, I looked down
at my very first pair of surgical scrubs,

which to me represented the first step
towards a career I had worked so hard for.

And I tried to convince myself
that this is just me

caving under the pressure
of a really important day.

But in my heart I knew,

I knew there was something much,
much more ominous than that.

I walked into the hospital
that morning as a provider,

but I didn't walk back out
for over a week.

When I did, I left as a patient.

My hospital admission was
full of spinal taps, and MRI scans,

IV infusions, and painful tests.

When the results came back
it was official:

I was one of 2.3 million people worldwide

living with multiple sclerosis.

There's no cure for MS,

in fact, we don't even really know
what causes it.

There're treatments
for some types of MS

but they don't reverse damage
that has already been done,

they're not guaranteed to work,

and they come along with some serious,
sometimes even deadly, side effects.

It's the most common
neurological disease in young people,

most often striking in one's 20s or 30s

when most of us are
in the primes of our lives.

Like a lot of 25 year olds, I was busy
finishing school and starting my career,

planning my wedding.

MS was not part of my 5-year plan.

It's an autoimmune disease
of the brain and the spinal cord.

Normally, our immune
system functions keep us alive,

but in the human body,
the line between healthy and sick

is often perilously thin.

The same life sustaining immune system
can turn against us

and the results are disastrous.

For reasons not wholly understood,
in people who have MS,

the immune system begins
to attack our nerves.

Nerves link the brain and the spinal cord
to the rest of the body, allowing them

them to communicate back and forth
via electrical and chemical signals.

Much like this wire that needs insulation
in order to conduct electricity,

a nerve needs insulation
in order to conduct its signals.

In the human body
this insulation is called myelin.

Now, picture this wire
as the cable that goes to a television.

If it were to be damaged, or cut,
your nice HD picture would go away.

Well, MS is sort of the same situation.

Immune cells target and destroy
the myelin insulation around nerves,

leaving the inner wiring
of the nerve exposed.

Some signals make it through,

but overall, the nerve
is frayed and unreliable.

Over time, scar tissue forms
around these damaged nerves,

creating permanent lesions
that we can actually see on MRI scans.

Now, a damaged TV cable
might give you static,

but because nerves control every movement

and process
all sensory information in the body

a damaged nerve can cause
a huge variety of problems.

Symptoms can range from mild,
such as numbness and tingling,

to disastrous: paralysis, loss of vision.

There's no way to know

where in the brain or the spinal cord
MS is going to attack

and no two people with MS are alike

making it the sort
of the whack-a-mole of diseases.

A lesion could pop up in the speech center
of your brain causing you to talk funny.

One could jump up in your spinal cord

and cause paralysis
and numbness in your legs.

In addition to the variety of symptoms,
there're also a few different types of MS.

In the type that I have,
relapsing remitting,

there're periods of sudden attacks

where new lesions form
and new symptoms occur,

followed by periods
of relative dormancy or remission,

hence relapsing-remitting.

This is the most common form of MS,

and the only type
that's somewhat treatable.

In other forms,
progressive forms,

disease and disability
accumulate in a linear fashion,

and at this time there're no treatments,
no medications on the market

that effectively slow it down.

Furthermore, patients like me
who have relapsin-gremitting MS

can transition into
progressive MS at any time,

at which point, our treatment options
are pretty limited.

Now, I know what you're thinking,
all things considered,

you look pretty good, and I do

(Laughter)

but that's only because of the hundreds
of injections I've given myself,

the thousands of pills
that I've swallowed,

and the monthly IV infusions that I get
which depress my immune system,

keep my symptoms somewhat controlled,

and hopefully, work to keep
my relapses to a minimum.

I'm not having a relapse right now

but the MS version of remission
is different than you might think.

Relapses can leave us
permanently worse for the wear.

Recovery from a relapse is not guaranteed

and there's no way to know with certainty

whether a loss of function
is permanent or not.

Even in remission,
we struggle with this disease

and the after effects of relapses
every single day.

I also look so good because a lot
of the symptoms of MS are invisible.

I don't look sick,

but I have over a dozen lesions
in my spine and my brain.

I don't look sick, but my legs go numb

whenever I walk a short distance
or face the stage of a TEDx conference.

I don't look sick,
but I take antiseizure medication

to deal with the overwhelming nerve pain
left over from a prior relapse.

I don't look sick,
but I have a cane in my closet

that I pull out at days
that I can't walk on my own.

I'm getting married in May,
and I have to have a contingency plan

for if I can't walk myself down the aisle.

A week after this photo
of me hiking was taken,

my right leg became virtually paralyzed,

and I needed a cane
and a wheelchair just to get around.

And that's really the most frustrating
part of this disease:

I never know what's around the corner.

I don't know if tomorrow
is going to be a good day or a bad one.

I don't know
when the next relapse is coming

or what it's going to do to me.

I could be hiking up mountains one day,

but unable to walk
across the room the next.

The second time that I was admitted
to the hospital for a relapse,

a young nursing student
was assigned to me.

She confessed
she didn't really love neurology.

She wasn't particularly good at it

which I accepted as a personal challenge
because neurology is my passion.

I taught her how to do
a thorough neuroassessment

using my own broken body as exhibit A.

"Note the absence
of deep tendon reflexes", I exclaimed

as she unsuccessfully taped on
my knees with the reflex hammer.

That's because of my spinal lesions.

I taught her how to memorize
cranial nerves,

and when she came back the next day
she had that look in her eye.

It was the look of a student
who finally understood a concept,

that they never thought they would,

and it felt really great
to have played a part in that.

And that nursing student planted a seed
in me that would begin to sprout very soon

but later, after I left the hospital,

I was reading one of the notes
my doctor had written about me.

It said, "Advise patient
to pursue new career options."

Prognosis, "Poor".

And that was when I realized something:

because I was diagnosed so young

chances were good that I would live
with this disease for more years

than I ever even knew
what it was like to live without it.

It was up to me, and me alone,
to set the tone for those years.

I didn't want to be a victim
for the rest of my life.

I saw no good reasons to give up
on my ambitions so I took charge.

I decided not to take
a leave of absence from school,

and I read every neurology textbook
that I could get my hands on

making myself a virtual expert
in the pathophysiology of MS.

Then I decided to put my knowledge to use

in the best way a graduate student
knows how: by taking an exam.

And that's how I became
a board-certified MS nurse

just six months
after being diagnosed with MS myself.

I initially took that test as an act
of defiance, to prove to myself

that I could get more out of this disease,
than it could ever take from me.

I was still really focused
on my anesthesia career,

and I didn't know
if I would ever put it to use,

but it was really gratifying
to hang up that certificate on the wall,

and add a few more letters after my name.

But not long after that,
my neurologist called me.

She needed a temporary staff nurse
and wanted to know if I'd be interested.

I took the job, and I loved it.

I found that I could use
my personal experience,

combine it with
my professional expertise,

and use that to have
a positive impact on the lives of others.

But now I had a tough decision to make:
stay in the anesthesia program,

that I'd worked so hard for
in the first place,

cope with my MS, trying not
to let it change me too much,

or do the scary thing:

blaze a new career path for myself
and see where it takes me.

I decided to change my focus
to become a nurse practitioner,

and I hope to continue working
with people who have MS

for as long as possible.

Being an MS nurse has taught me
so many valuable things.

One of the first things I learned

is that everybody has the same questions
I had when I was first diagnosed,

"What's next?"
"Am I going to die from this?"

"Am I going to end up in a wheelchair?"
"Can I still have children?"

It's a lot to take in.

So I decided to start a website,

and I used those questions
as my launching point.

The unfortunate reality
of our current healthcare system

is that not every provider
has the time that it takes

to teach every patient
everything there is to know one-on-one.

And a lot of people
don't even have access to the specialist

who can give them
that information in the first place.

I wanted my site to be
a resource for those people.

I wanted them to walk away having learnt
something new and being more capable

of being an active participant
in their own care.

And I suddenly had people
from around the world writing to me

saying they're actually moved to tears

because they have lived
with this disease for decades,

but this was the first time

that they understood what was
going on with their own bodies.

Can you imagine what that would be like?

Living with a chronic incurable disease

that slowly took away pieces
of your mind and your body,

and you didn't even understand
what was going on?

I'm not offering a cure,
but I'm empowering people,

and that can go a surprisingly long way.

After starting my own site
I also began writing

for several other publications
and websites,

working hard to spread awareness
in every way that I can.

My mission is to educate, empower,
and help work towards a day

when a young, invincible
25 year old can hear the words,

"You have MS, but don't be afraid;
there's a cure."

In order to achieve this,

I've taken an active role in research
in every way that I can,

from participating in clinical studies

to further our understanding
of this disease,

to meeting with US representatives
on Capitol Hill

to discuss legislation and funding
for groundbreaking research efforts,

to even playing a small part
in a pioneering new research initiative

that's the first of its kind for MS.

This initiative is putting the power
into the hands of people

who live with this disease every day.

They can donate
their health data, biosamples,

and they even get to decide
what research initiatives take priority.

Clinical research is underfunded,
time consuming, and expensive.

We're hoping that by crowdsourcing
a huge data bank

that researchers can tap into,

we can maybe point out trends
that we didn't know existed.

Cut the amount of time and money
that it takes to run a study.

Who knows? Maybe even get us
towards a cure faster.

My diagnosis was not the end

of my youth, my ambition, or my drive.

In fact it was pretty much the opposite.

MS has made me
a better nurse, a better person,

and it's given me a more purposeful life.

This has become something bigger
than just me and my challenges.

This is just the beginning of my story.

Life will challenge you at some point,

it's going to hand you something unfair,

it's going to take something from you,

and it's going to interfere
with your plans.

When this happens, will you let yourself
thrive in the face of adversity?

Will you also find purpose in it?

Maybe even use it to make
the world a better place?

The choice is yours:
deny, cope, or thrive.

(Applause)